Rethink on MS pill gives hope to Scots sufferers

MULTIPLE sclerosis sufferers in Scotland will learn tomorrow if the world’s first oral pill to alleviate symptoms of the condition is to be prescribed on the NHS.

The drug, Fingolimod, is already available to MS patients in England and Wales after being approved by the National Institute for Clinical Excellence in March. But the Scottish Medicines Consortium, which evaluates drugs for use in Scotland and ruled earlier this year that it did not provide value for money, has now reconsidered its decision.

The earlier judgment sparked anger among campaigners in Scotland, which is believed to have the highest rate of MS in the world, with approximately 10,500 diagnosed cases.

At present people with MS have to attend hospital or a clinic to receive a weekly injection of interferon to slow progress of the disease. Others can attend less frequently for deep-muscle infusion therapy, which many say leaves them exhausted and in pain.

Those who receive regular injections claim they have a “six day week”, with one day wiped out by the debilitating effects of the treatment.

Patients claim that taking a daily pill would improve their quality of life and avoid unnecessary doctors’ appointments. For those who live in remote island communities, where there are significant numbers of MS sufferers, it would put an end to lengthy journeys to and from mainland hospitals.

MS damages the central nervous system, leading to a range of disabilities including co-ordination difficulties and visual impairment. The reasons for Scotland’s high rates of the condition remain unknown, although it is thought a lack of sunshine and Vitamin D may trigger the illness.

Fingolimod, also know as Gilenya, is said to reduce relapse rates among MS sufferers by around 50%. It has been approved for use in 35 countries including the United States and Germany.

Campaigners says as well as improving quality of life, Fingolimod is also cost effective. The annual bill for treating one patient with the pill is estimated at around £19,665 while the cost for Natalizumab, the drug used in monthly infusions, is around £21,257.

Hospital stays for patients who suffer a relapse cost the NHS more than £30,000 per admission. Only a small number of Scots have been prescribed the drug after their GPs requested funding for consideration on a “case by case” basis from health trusts.

Gillian Rafferty, 48, from Moffat, is one who has been taking part in a trial for Fingolimod after her GP referred her to specialist MS nurses in Carlisle. “I started taking the drug in 2007 and since then I’ve had no relapses or MS symptoms. Before that I had to take steroids to manage the symptoms when I had relapses,” said Rafferty.

“I had one when my daughter Sarah was 11 months and I couldn’t feel anything down my right side. I was terrified of dropping her and couldn’t do up her BabyGro.”

Rafferty added: “It’s not really fair that people are getting Fingolimod in England and Wales. I’d always thought that the attitude here in Scotland was usually more go-ahead in health matters, especially since we’ve got more people with MS in the world as a percentage of the population. I’m hoping that injectables will become a thing of the past.”

Becky Duff, head of policy and communications at MS Society Scotland, which expressed disappointment at the SMC decision in March, said: “We would welcome any decision that would increase the treatment options for people with highly active MS.

“For the past 10 years, people with MS have needed to inject to receive their medicines – a pill represents a significant step forward and will greatly improve quality of life.”

Announcing their decision not to make Fingolimod available in Scotland, the SMC acknowledged there was evidence of a reduction in relapse rates. But they claimed it had not been compared to another drug available in Scotland and that it could be responsible for a short-term decrease in heartbeat, swelling of the retina inside the eye and that about half of the patients monitored went on to develop infections.

A spokesperson for the SMC said: “We were disappointed not to be in a position to accept Fingolimod as a value for money medicine for use within the NHS in Scotland when we assessed the manufacturer’s evidence in March of this year.

“Unfortunately there were weaknesses in the economic case presented by the manufacturer that meant that it was not considered cost-effective. However, we’re pleased that the manufacturer has been quick to come back to us with a revised submission. We will be making a new announcement tomorrow.”

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